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It was a hasty but typical Tuesday morning when Jeff Frank of North Aurora went to wake up his 16-month-old son Emmett and noticed him in an unusual sleep posture: a yoga posture. When he returned, Emmett had already left.
Joe and Nicole Wesolowski of Naperville were preparing their eldest daughter's bedtime when they decided to check if their 15-month-old son, Ryan, had been sleeping in his cradle since the beginning of the evening. He had stopped breathing.
And when Raquel Torres of Glenview tried to wake Julian, her 2-year-old son, for the day, she could not. "It was cold like ice cream."
All their children were dead, some for hours. And even years later, no one can tell them why.
Unidentified Sudden Death in Childhood, or SUDC, is defined as the death of a child aged 1 to 18 years – although most are infants – with no known cause, even after an autopsy and an investigation by doctors, sometimes with police and child protection officials. These children are older than the 12-month-old age limit for sudden infant death, commonly referred to as SIDS, and have exceeded the risk of suffocation in their sleep, a sudden death factor in younger infants.
Now parents, researchers and other advocates are looking for answers. They are calling for federal legislation that would fund SUDC research and improve classification and investigation of SUDC deaths. The researchers say that the first step is to determine the exact number of these deaths, hoping to find common links one day. This could not only provide answers to devastated families, but also offer life-saving measures such as sleep safety campaigns, which are expected to lower SIDS rates across the country.
The New Jersey-based SUDC Foundation and the Centers for Disease Control and Prevention predict that approximately 400 American children die each year from these mysterious deaths – the fifth leading cause of death among children aged 1 to 4 years – well that researchers say that number is probably higher. Yet the SUDC is largely unknown even in the medical world. Families say their doctors, intrigued by the deaths of children, have never heard of them.
Torres, whose son died more than two years ago, still does not understand.
"There was no sign of his illness," said Torres, moved. She is always haunted by this question: "Is there anything I could do?"
"Save my baby"
At the beginning of her service, on October 15, 2013, Kristy Frank observed Emmett's son sleeping, but a voice in her told her not to go into the room before going to the clinic. optometry that she owns with her husband.
Shortly after, Jeff Frank was preparing the couple's older sons – then aged 6 and 4 – for the day. When he went to get Emmett and turned him over, the toddler was not breathing anymore and felt like a "dead weight" in his arms. The father laid his son on the ground and started cardiopulmonary resuscitation, shouting that his 6-year-old son is calling 911. The boy then called his mother's cell phone, not knowing that she had left it at home. the House. His voicemail recorded the next few minutes as Jeff Frank shouted "Save my baby" to the paramedics who had arrived. They quickly told him that his son was already dead.
After Jeff Frank called his wife to work, a police officer had to confirm what he was saying to her, because she did not believe it. "He had just seen the pediatrician (for a checkup) a few weeks ago," she said.
When Kristy Frank arrived home, Emmett was wrapped in a blanket so he could be held in his arms one last time before the coroner took him away. In the absence of an obvious cause of death, the police and the Department of Child and Family Services of Illinois have opened an investigation. The Franks were forced to place their other children in the custody of their loved ones and could not stay alone with them for about a week until the DCFS released them, they said.
In the days that followed, Kristy Frank announced that she would walk around the house without really knowing what to do with her hands, as she had the habit of lugging Emmett, an adorable and happy child who adored her. Kissing and stroking the back of his parents he kissed them.
"I thought she'd blame me," Jeff Frank said. "For months, I thought I was the cause of his death."
At one point, Jeff Frank said, he learned that his son's death was out of his control. Although he agrees, he may never know why, he hopes to find answers. "There must be a reason."
Search for answers
In seeking answers, the Franks, as well as more than 100 families across the country, sent the medical records and blood samples of their deceased children and themselves to the SUDC Research and Collaborative Registry, funded by private donations, mainly through the SUDC Foundation.
Dr. Orrin Devinsky, a neurologist at the Langone Medical Center at New York University and senior researcher at the SUDC Collaborative Research Center, said he was looking for genetic mutations in these children and their families, while looking at other information in what he calls "extremely". under-studied population. While SIDS have received millions of dollars in federal grants from the National Institutes of Health and CDC for research and public education campaigns, "the SUDC has not received any credit," Devinsky said.
He is accompanied by more than 30 other physicians and scientists from different specialties, including forensic scientists and coroners, who review children's medical records and investigate their deaths. They also interview participating families.
Devinsky and his colleagues found that 30% of the children he had studied had a history of febrile seizures, or a fever. These crises rarely result in death in the general population, he said, but they represent a significant portion of the children in the study. He also found that almost all of these children died in their sleep and that 8% of them had a mutation in a gene affecting the heart or brain that could have accounted for their death.
But "the vast majority remains unexplained," he said. If more families who have lost a child in an unexplained death hear about SUDC and the research partnership, Devinsky said, the size of his sample will increase and with it the chances that his research will provide answers.
Laura Crandall was a parent in search of such answers over two decades ago.
Crandall, Executive Director of the SUDC Foundation, co-founded the organization after the sudden death of her daughter Maria at the age of 15 months in 1997. As no one could identify a cause, Crandall began looking for answers and support, but found only information about SIDS. What began about 20 years ago as a program of a large SIDS organization became its own non-profit organization more than four years ago. Crandall said the foundation now serves 800 families around the world guiding them toward the collaborative research project while providing grief support.
"We are trying to reunite families … to reduce isolation," she said.
The foundation, dubbed the SUDC Awareness Month, also helped shape the pending federal legislation. Scarlett's Sunshine Act owes its name to a 16-month-old Pennsylvania girl, Scarlett Pauley, who died in January 2017. Her mother, Stephanie Zarecky, who now works for the foundation, went to check her sleeping daughter before going to bed and was found Scarlett. did not breathe.
Zarecky had previously worked for US Senator Bob Casey, D-Penn. After hearing about Scarlett's untimely death, he introduced the bill, he said. The bill would provide, in part, federal funding for a CDC study on the sudden death of a child and the sudden death of an infant, as well as subsidies for local agencies in order to reduce the risk of death. improve investigations and data collection on child deaths.
"It's bad enough to have the horror of losing a child," Casey said. "It's a lot worse if you do not get your answers."
Examine the deaths of children
Through a grant from the SUDC Foundation, the National Association of Medical Examiners and the American Academy of Pediatrics are currently reviewing how they review child deaths. Their findings and recommendations are to be published in a book later this year, said Dr. Eric Eason, assistant medical examiner at the Cook County Medical Examiner's Office, who had worked on the project.
When a child dies and there is no clear cause, the coroner's office or local medical examiner conducts an autopsy to determine the cause of death, said Eason. In Cook County, about 10% of the deaths of children aged 1 to 18 remain unexplained after this process, he said.
At this point, the medical examiner issues a death certificate marked "indeterminate". But not all offices use the same terminology, he said, and that term is problematic.
"Putting undetermined on a death certificate could imply that a death is suspicious, and there is often stigma," Eason said.
Dr. Vincent Palusci, a professor of pediatrics at New York University School of Medicine, who worked on the project, said the forthcoming book would also guide pediatricians on how to deal with sudden death. their patients and raise their awareness of the SUDC.
"In general, in the career of a pediatrician, one or two children will die suddenly … and most of them will be young children," said Palusci, adding that this lack of knowledge justified additional training. "Not only am I helping the family overcome their grief," said Palusci, "but what do I recommend them to do for their surviving children?"
Anxiety persists
Families who have lost children as a result of sudden, unidentified death express their anxiety about the parenthood of their other children. They put heart monitors on their children while they sleep, watch them all the time at night, and frantically go on medical tests to make sure they are doing well. The image of looking for a dead child, "haunts you," said Jeff Frank, who used a heart monitor for his daughter who was born after the death of his son.
Artavia Cleveland, of Canton, Ohio, said that since she lost her 2-and-a-half-year-old son, Tayjon, in August 2016, she was constantly worried about her other children, especially at night. Although Tayjon was adopted, he is biologically related to Cleveland's adopted daughter. And because she does not know why Tayjon is dead, she worries about all her children.
Cleveland described his toe-walk ritual in his young son's room, Tyler, every night. "You hold your breath, you listen and wait to see if he's still alive." And when his older children sleep, "you go into full panic mode."
The Wesolowskis bought heart monitors for their children after Ryan's sudden death on March 17, 2015. While his 3-year-old son Weston passed his monitor, his 1-year-old daughter Quinn still lies with hers, said Nicole Wesolowski.
"We are too cautious," said Wesolowski, remembering that he had just scolded his eldest daughter, 9-year-old Natalie, for not wearing gloves in cold weather. "I just do not want anything to happen to them."
"Anyway, losing a child is terrible," said Nicole Wesolowski, describing how she constantly questioned what could have happened. Was it Ryan's blanket? Was it the minor cold that he had? "For this to happen so suddenly, and there is no reason? How can we prevent this from happening to our other children? "
Estuardo and Raquel Torres said they found comfort in the families met through the SUDC Foundation, who know what they are going through.
After the death of their son Julian, they did not even know the term SUDC until Estuardo Torres discovered the foundation's website while browsing the Internet in search of a possible cause of death.
Families like theirs "realize their worst nightmare without knowing where to go," said Raquel Torres. "Do not have this closure, do not know? It's very difficult. "
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